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Mental and physical stress and strain experienced by family caregivers

Acting as a “family caregiver”, i.e. caring for a loved one at home can be associated with a great deal of mental and physical stress and strain. This article outlines how family caregivers can recognize the signs of being overwhelmed, avoid burnout and access psychological and practical supports.

At a glance

  • Approximately 6.6 million people in Germany are classed as “family caregivers”. In other words, they act as caregivers for loved ones at home.
  • Being a family caregiver can be very stressful, both mentally and physically. The burden can be particularly great when caring for those with dementia.
  • It is important for the caregiver to be able to take breaks from their responsibilities to protect their own health and avoid mental health problems.
  • There are several ways to access psychological support and practical help.

Note: The information in this article cannot and should not replace a medical consultation and must not be used for self-diagnosis or treatment.

Person in a wheelchair sitting at a laid table with other people. A woman is serving food from a dish in the background. A woman in a wheelchair is sitting in the foreground.

What causes stress and strain among family caregivers?

In 2019, around 80 percent of those in need of care in Germany were cared for at home by family carers, in most cases without the assistance of professional care services. It is not uncommon for family caregivers to have to restrict or even give up gainful employment due to their responsibilities to care recipients. A significant proportion of family caregivers are themselves already of retirement age – and, in some cases, much older. In addition, many children and adolescents between 10 and 19 years of age also take on responsibility for caring for loved ones.

Acting as a caregiver can be very physically demanding due to tasks such as lifting, positioning and supporting the care recipient. According to a study from 2018, more than 4 out of every 10 family caregivers reported experiencing back and joint pain. More than one in five family caregivers stated that the care tasks they undertook usually or always affected their physical health.

Caregiving often also leads to mental strain, including feelings of shame, sadness, stress, social isolation and helplessness. More than half of the caregivers surveyed showed signs of depression in their self-assessment.

How can you recognize burnout?

Family caregivers should take special care of their own health, both physical and mental. It is important to recognize signs of burnout early on to prevent health problems or even serious illnesses developing from individual instances of stress. It’s also easier to care for other people if you’re feeling well yourself.

It’s easier to care for other people if you’re feeling OK yourself.

Pay attention if you detect any of the following signs over a prolonged period:

Physical symptoms

Psychological symptoms

  • nervousness, restlessness or irritability
  • memory and concentration problems
  • listlessness or restlessness
  • mood swings
  • helplessness, depression, loneliness, anxiety, anger, sadness
  • feelings of worthlessness
  • excessive use of medication, tobacco, alcohol and other drugs 

These symptoms are possible indicators of burnout, although they may also have other underlying causes. For example, tiredness can be caused by burnout but also by an underactive thyroid.

If you have one or more of these symptoms, consult your family doctor.

What roles are played by stress and support?

Acting as a caregiver is a great responsibility that comes with many challenges both short- and long-term. For example, caregivers may not have sufficient time, knowledge or skills to cope with care tasks without experiencing excessive strain. This kind of strain can in turn lead to stress and, as a consequence, physical symptoms.

More than one in ten family caregivers usually or always feel alone or helpless when providing care to their loved ones. They also feel more physically and mentally stressed than people who do not have a caregiving role.

It is particularly important for caregivers to get help and look for support.

It is particularly important for caregivers to seek help and support. You can find out what options are available in the section entitled Practical support.

How can family caregivers protect their mental health?

This section summarizes a few strategies that caregivers can use to cope with stresses and strains.

Change of perspective – seeing things through the eyes of the care recipient

It can help to look at things from the perspective of the person in need of care, especially if you frequently become impatient, irritated or even angry while providing care.

You could ask yourself the following questions, for example:

  • What would I do if I … was thirsty, for example, and couldn’t say so?
  • How would I feel if I … needed help with eating, washing or …, for example?
  • What would make me happy if I … could no longer easily follow a conversation involving several people, for example?

This change in perspective can help the caregiver gain a greater understanding of the other person. This improves how the caregiver and the care recipient interact.

Make time for yourself by meeting friends

Friendships are valuable resources. Of course, it is only natural for caregivers to want to tell those they trust about stressful situations encountered while providing care. However, it can also be helpful to put difficulties aside for a while – especially if the other person isn’t well equipped to deal with the subject. In this case, talk instead about things that make you happy. It can do you good to forget your problems for a while.

Do something to restore your balance

Some people like to go jogging, others prefer the cinema – try to remember what you like best so that you can remain creative and active. Someone is sure to be able to take over your care tasks so that you can take time for your interests.

Exercise

Regular exercise contributes to your mental and physical health. No need for strenuous endurance sports – long walks, yoga sessions and other physical activities several times a week can help increase your mental and physical resilience.

What to do in an acute crisis

If tension, conflict or negative feelings become too intense, there is a risk of aggressive behavior or even violence. What can you do in such an acute crisis? If possible, leave the situation, if only for a short time.

Concentrate on your breathing. Breathe deeply in and out a few times. Pay attention to what you see, hear and feel in your body. If you can’t calm down, it may help to count slowly and loudly backwards from 10 down to 0. Or mindfully drink a glass of water or tea.

It can also be helpful for you to have one or more people you can contact in this kind of situation. These could be people capable of taking over your caregiving duties in an acute crisis.

The guides published by the Federal working group of senior citizens’ organizations (Bundesarbeitsgemeinschaft der Senioren-Organisationen e.V. (BAGSO) and the Center for Quality in Care (Zentrum für Qualität in der Pflege, ZQP) provide more information about coping strategies.

You can also find information about violence in caregiving settings in the ZQP portal.

Where can you find support?

There are many different ways for caregivers to access psychological support.

Sharing experiences with other family caregivers

It can be a relief to feel understood but many people without experience of caregiving lack any frame of reference. However, others caring for loved ones often have similar experiences. They can understand your worries, problems and feelings. You can find people with similar experiences in support groups for family caregivers.

A Germany-wide database of support groups and family caregiver groups is provided by the National Contact and Information Point for Encouraging and Support Self-Help Groups (Nationale Kontakt- und Informationsstelle zur Anregung und Unterstützung von Selbsthilfegruppen, NAKOS).

Keeping a journal and online advice – relief through writing

It can sometimes help to write down your thoughts and feelings about stressful experiences. In this way, you can get your thoughts in order, establish distance from what you’ve experienced and process your feelings. If you want to find advice for caregivers online, you can write to experienced psychologists for answers to your questions.

This kind of advice is available, for example, from the online advice service pflegen-und-leben.de provided by the certified center ÜBERLEBEN gGmbH.

If you are in an acute crisis

Call the TelefonSeelsorge crisis helpline for free advice 24/7 on the numbers 0800 – 111 0 111 or 0800 – 111 0 222.

If you are concerned about becoming aggressive or even violent towards the person you are caring for, please contact a specialized telephone crisis advice service for caregivers.

If you’re wondering whether psychotherapy could help

Ask your general practitioner about this subject. Alternatively, visit the “Paths to Psychotherapy” website of the Bundespsychotherapeutenkammer (Federal Chamber of Psychotherapists) to find out whether this treatment is an option for you. You can use the National Association of Statutory Health Insurance Physicians’ Find-a-doctor function (telephone number 116 117) to search for psychotherapists in your area and contact them directly. A doctor’s referral is not required.

What can prevent physical symptoms from developing?

The following three things can help you to protect your own body from harm caused while acting as a caretaker:

Knowledge and skills

Many family carers have to care for a loved one from one day to the next. How are they supposed to know the best way of lifting a person from a wheelchair into their bed or into a car? Doing it intuitively may work for a while. However, without knowing specific maneuvers and lifting techniques, caregivers risk exposing themselves to long-term physical problems, such as pain or back problems.

Ask your statutory or private health or long-term care insurance provider where you can find training or care courses on the subject that is important to you.

Home care aids and equipment

Aids and equipment are available to make lifting, turning or supporting care recipients easier. These include turntables, repositioning aids, sliding mats and slide boards. There are also automatic hoists that can do the repositioning and lifting for you. Other devices that provide practical support include walker-rollators and special cutlery, for example. The important thing is to agree with the care recipient in advance on the use of aids.

Interesting fact: You can apply to have the costs of many aids and items of equipment partly of fully reimbursed. Free advice about the most suitable aids for individual situations is offered by local advisory centers or professional care services. They can also demonstrate how the aids are used correctly.

Physical support

Consider whether you could ask relatives, friends or acquaintances for help more often with physically demanding tasks such as lifting. Attending training courses in caregiving is helpful and useful – this is where you will learn the appropriate skills and how to use technical aids and equipment.

What types of practical support are available?

Feeling alone and helpless increases the risk of family caregivers experiencing mental and physical stress and strain. It is therefore important to seek support.

In some cases, family caregivers need to learn to give up control and responsibility and trust in others – allow other people to help you before your caregiving overwhelms you.

The following types of practical support are available:

Local advice centers can be found on the website of the Center for Quality in Care (Zentrum für Qualität in der Pflege, ZQP).

Voluntary help

Voluntary helpers can be found, for example, through the caregivers support network Netzwerk pflegeBegleitung.

Vacations with care recipients

Vacation packages are available that cater specifically to the needs of the care recipients and those of their loved ones.

Information is provided by the Urlaub & Pflege e.V. (“Vacation & Care”) association, for example.

Special support for children and adolescents acting as family caregivers

The Pausentaste (“Pause Button”) website provides information about the practical and psychological support available to caregiving children and adolescents.

Reviewed by the Center for Quality in Care (Zentrum Qualität in der Pflege, ZQP).

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